Chronic Illness and Disability in Children and Adolescents: Implications for Transition

1. Chronic Illness and Disability in Children and Adolescents: Implications for Transition Judith S. Palfrey, MD Susan Foley, PhD University of Minnesota January, 2007

2. Invitational Transition Conference 2008 Building an Interdisciplinary Research Agenda to Enhance Quality of Life and Transition to Adulthood for Youth with Chronic Health Conditions January 18, 2008 Speaker Judith S. Palfrey, MD T. Berry Brazelton Professor of Pediatrics, Harvard Medical School Professor, Harvard School of Public Health Chief, Division of General Pediatrics, Children’s Hospital Boston PI, Opening Doors for Children and Youth with Disabilities and Special Health Care Needs Sponsors: University of Minnesota School of Nursing, Center for Children with Special Healthcare Needs Minnesota Department of Health – Minnesota Children with Special Health Needs Co-sponsors: Department of Pediatrics, University of Minnesota Medical School Maternal & Child Health, University of Minnesota School of Public Health The Institute on Community Integration, University of MN College of Education and Human Development

3. Children and Adolescents: Implications for Transition • Introduction • Historical Context • Current Epidemiology • Current Needs • Medical and Educational Transitions • Research Agenda

4. Children and Adolescents: Implications for Transition • Introduction • Historical Context • Current Epidemiology • Current Needs • Medical and Educational Transitions • Research Agenda

5. 1900-1960s • High Rates of Infant Mortality • Especially among prematures • Epidemics including Polio • 21,000 new cases in 1952 • Few Cures for Chronic Illnesses • Few Surgeries for Congenital Anomalies • Institutionalization

6. 1960s-1980s • Vaccines, Antibiotics • Neonatal Care • The “Ologies” • Surgery for Congenital Anomalies • Medicines for Chronic Illnesses • Physiologic Explanation for Disease States • Deinstitutionalization/civil rights

7. 1980s-2000 • Polio Decrease • Greater Prominence of • Post NICU Conditions • Congenital Anomalies • Chronic Illnesses • HIV Epidemic • Technology Assistance • Community Inclusion

8. Millennial Morbidity • Illness Created or Sustained through 21st Century Technologies • High Rates of Injuries (TBI) • Second Generation Illness (Children of Diabetics increase in Congenital Anomalies) • Cohort Survivorship

9. Children and Adolescents: Implications for Transition • Introduction • Historical Context • Current Epidemiology • Current Needs • Medical and Educational Transitions • Research Agenda

10. Leading Causes of Death: By age

11. Leading Causes of Death: By age

12. Children with Special Needs No comprehensive catalogue of chronic illness and disability until Gortmaker and Sappenfeld in 1984

14. Asthma Obesity Depression ADHD IBD Leukemia Diabetes CHD Autism Conditions with Increases in Prevalence1980s-2000s

15. Increases in Prevalence(courtesy Jim Perrin)

16. Conditions with Decreases in Prevalence1980s-2000s • Spina Bifida • Down Syndrome • JRA

17. Conditions with Little or No Change in Prevalence 1980s-2000s • Cerebral Palsy • Cystic Fibrosis • Sickle Cell Anemia

18. Congenital Heart Disease Leukemia Cystic Fibrosis Sickle Cell Anemia Spina Bifida Cerebral Palsy HIV Down Syndrome Conditions with Increases in Survival

19. Survival to Age 20

20. Racial Disparities in Survival

21. Survival Low Birth Weight and Prematures Increased survival rate of low birth weight infants • 50% in 1980 • 80% in 2000

22. Survival Low Birth Weight and Prematures • Chronic lung disease • Short bowel syndrome • Cerebral palsy • Vision/Hearing abnormalities

23. Assistance by Medical Technology • Oxygen • Tracheostomy • Gastrostomy • Total Parenteral Nutrition • Shunts • CIC • Etc.

24. Inpatient Health Services Utilization Children with Special Health Care Needs Transitioning to Adulthood

25. High Rates of Hospitalizations • Adolescents with disabilities and chronic illness make up substantial proportion of in-patient service • In Children’s Hospitals • In General Hospitals

26. Health Care Expenditures • Expenditures are high (E.G. asthma costs for adolescents close to $1Billion) • High utilization of Medicaid dollars

27. Use of Medicaid InsuranceAges 14 – 20 years • 42% of hospitalizations for all diseases • Highest use in patients with Sickle Cell Disease (64%) • $968 million in total Charges for Medicaid inpatients

28. Employment and Educational Impact Children with Special Health Care Needs Transitioning to Adulthood

29. Education/Employment • Many missed days of school • Some youth “out of school” • Concerns about employment • Education/careers/livelihood

30. Hospital Days/Missed School ConditionLength of Stay Cystic Fibrosis8 (4 – 18) days Technology5 (2 – 9) days Sickle Cell4 (2 – 7) days

31. Condition Cystic Fibrosis IBD Asthma Impact 45-52% unemployed 32-38% unemployed 5X more likely to report inability to work Employment Impact

32. “Out of School” Youth Nationally representative sample (NLT2) 2001 and 2003 • 11, 000 (13-16 yr) Special Ed services grade 7 or above • As of December 1, 2000 28% of youth were out of school in 2003

33. “Out of School Youth” 28% left without a diploma Highest dropout for those with emotional disabilities (44%) Most youth have few functional impairments and are reported to be in good health

34. “Out of School Youth” Some youth in every disability category have significant functional impairments Social skills are reported to be the most problematic

35. Employment After High SchoolFor Youth With Disabilities The Bad News 40% working for pay (vs. 63% for youth without disabilities) The Better News Working more hours per week and more are working full-time than they were in 2001.

36. Employment After High SchoolFor Youth With Disabilities The Good News Hourly wages have increased with fewer working for less than minimum wage The Less Good News Most not receiving accommodations from their employers and most have not disclosed their disability

37. Children and Adolescents: Implications for Transition • Introduction • Historical Context • Current Epidemiology • Current Needs • Medical and Educational Transitions • Research Agenda

38. Child/Family includes family support resources Pediatrician and other medical providers School includes early intervention Community-Based Team Insurance providers/financial resources Religious /spiritual supports Social Services includes mental health

39. Transition Considerations • Conditions Complex • Cultural Concerns • Medical Home works but not familiar to Internists • Models of MedicalTransition • Educational/Employment Considerations

40. Characterization of CSHCN HAVE MULTIPLE CONDITIONS (n=151)

41. Trends in US Immigration Source: US Census Bureau. Statistical Abstract of the United States: The National Data Book. 120th Ed

42. The Medical Home Model • Comprehensive • Coordinated • Continuous • Culturally Appropriate • Family Centered Care

43. Individualized Health Plan (IHP) • Document for Family and Caregivers • Summary of Medical Information

44. Three Proposed Models • Diagnosis or Condition-based services • Age based services for various chronic conditions • Primary Care services

45. Diagnosis Based • Diagnosis or Condition-based services • Based on common needs of patients with a particular diagnosis or patients utilizing a particular subspecialist

46. Age Based • Age based services for various chronic conditions • Multidisciplinary team for adolescents transitioning in multiple areas of life, school, work, home, healthcare

47. Primary Care • Primary Care services • Integrating transition planning and coordination into the medical home at the level of the PCP

48. Common Principles • Care coordination • Self-determination/empowerment for adolescents and families • Community agency involvement

49. Common Principles • Utilization of toolkits • Resources • local, state, national transition related activities • Inclusion • Social work, financial counseling, vocational rehabilitation services

50. Possible Implications for Social Service Systems • General principles conform to transition principles encoded in IDEA • Condition specific models may not speak to the adult systems emphasis on function rather than condition